Access to information is essential to patients and doctors researching different medical conditions, including cancer. Journal papers offer the latest thinking on disease progression, reports of investigations in fundamental biology, new drugs, clinical trial results and so on. For those with chronic or life-threatening conditions, medical research offers the hope of new insights, new treatments and greater understanding. And, as I’ve written before on this site, access to medical research should be free to all, especially for the research that we – as citizens – have paid for through our taxes.
However, free and open access, as enshrined in the policies of the National Institutes of Health in the United States, conflicts with the commercial interests of the journal publishers. These companies make a lot of money by publishing scientific journal. The subscription fees for journals run into the thousands of dollars a year – way beyond what we as patients and their carers can afford. But the journals make money because university and medical school libraries, private companies and so on subscribe to them. An increased move to open access threatens this source of income.
So, the journals are fighting back and in the US there is now a Research Works Act being considered. This would basically take the publicly funded research results that are published by the NIH and open access journals back behind a paywall. No more free access to the latest information. If you want a particular paper you’ll either have to gain access to a university library or else pay the fees to access the paper (and fees range upwards of $30 per article).
If this Act goes ahead it will be a real loss. It will also be a grave injustice. For tax payers it will mean they are paying twice – once for the research to be carried out, and again should they want to read the results for themselves. But it will also mean denying access to potentially life-saving research to cancer patients at a time when they need it the most.
This site gets a lot of traffic from the United States. Please, if you are a US citizen please act now to stop the Research Works Act from becoming law. Write to your representative, write to your local newspaper, and if you are a scientist or doctor then please write to your professional association or society to take a stand in defence of patient rights.